On the "Wall of Hope," many attendees said Conference meant that they finally got to meet other people who understand their condition and understand what they are going through. Others said that at Conference, they felt as if they were surrounded in an inclusive environment of people who care and understand them. The word “understand” was used in so many responses – which just shows how valuable networking at Conference is!
To many attendees, Conference also meant “PHriendship." It is truly powerful that at Conference members of the PH community get to meet their “PHriends” in person, who they may have only previously been able to speak to through email or Facebook. Attendees said that these friendships have helped them immensely in their PH experiences, and the love and support they are able to gain from these relationships is what helps to make Conference so special for them.
Many of the Wall of Hope quotes also said that Conference meant learning a lot about PH while they were there. From hearing about others’ experiences with PH to learning about new and innovative treatments currently being researched and developed, Conference attendees feel as though they are “in the know,” and as if they are keeping connected with the latest happenings in PH, by attending Conference.
Below is a sampling of some of the great quotes from the 2012 Conference Wall of Hope:
“What Conference means to me…”
- “Conference means support, PHriendship, and love!”
- “Being at Conference means I traveled across the country on an airplane for the first time since I got PH. It means smiling at people who return my smile rather than stare at my oxygen tube or feel sorry for me because I have an IV pump.”
- “Conference means…meeting others who UNDERSTAND!"
- “Conference is a great way to feel like I’m just one of many. Here I’m not different!”
- “A lot! I love being able to see the people that I chat with. PHA has helped me learn and connect with others. I love to learn and feel comfortable enough to ask questions. It helps to make me feel more comfortable about my research.”
- “I’m a ten-year survivor and I dearly wish that I knew about this ten years ago – It’s amazing, a little overwhelming, and just heartwarming. I look forward to see what’s around the corner.
- “Conference is an opportunity to empower others with our experiences and knowledge of PHA. There is a happiness that overcomes you just knowing that you are in the presence of such strong survivors that all have the same purpose…which is HOPE.”
- “Conference means there is freedom in the future for patients with this disease.”
- “Conference is inspiration and aspiration for me. Meeting new and old PHriends and PHamily. A few days to feel like we belong to something so much bigger than PH. A time to remember the power of one and PHenomenal hope.”
- “Conference is an amazing opportunity to be a part of something big. Sometimes my family can’t understand what I go through, but my PHamily does. This support has helped me through some dark times. Conference allows me to visit my PHriends who have become PHamily. I found HOPE when I started losing it.”
- “We are not alone.”
So… What does Conference mean to you?Share your thoughts by posting a comment below!
Patient & Caregiver Services Intern, PHA